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Maya's Story: Epilepsy

When people see Maya, they see a sweet and affectionate middle-school student who loves singing, taking an acting class, watching movies and playing with her little sister. Looking at all that Maya accomplishes today, many people might not realize she has a condition called epilepsy.

Although Maya reached many of the typical developmental milestones of infancy, she experienced some developmental delays and displayed some unusual behaviors. Then, at 3, her world changed. As Maya and her family walked to the parking lot from a favorite restaurant, she instantly changed from walking and holding her father’s hand, to becoming limp as a ragdoll. Maya had just experienced a grand mal seizure (also known as a tonic-clonic seizure).

Maya’s parents, Mark and Sandy, rushed their daughter to a hospital. After multiple tests and an EEG (a neurodiagnostic test that measures electrical activity in the brain) the family learned that Maya’s experience was unlikely to be an isolated event. Her EEG revealed a high propensity for epilepsy. This diagnosis provided some clarity to Mark and Sandy, as Maya’s developmental delays and unusual behaviors now had an explanation.

Maya’s Treatments and Care

In the months that followed, Maya’s seizures continued—some so subtle they could barely be noticed, and others so large that her entire body would go into convulsions for several minutes. Doctors prescribed medications that would help, but only for a limited time. Maya’s seizures would subside and then return again full force. Meanwhile, a successful long-term treatment continued to elude doctors.

A couple of years after Maya’s diagnosis, the family moved from California to the Twin Cities. They soon discovered Gillette Children’s Specialty Healthcare and pediatric neurologistGalen Breningstall, M.D., a specialist in treating seizure disorders. Breningstall ordered a new battery of tests, including a new EEG. Through these tests, he determined that Maya had a type of epilepsy that made her vulnerable to many different types of seizures. Breningstall started Maya on a new medication regimen and soon, she began to see gradual improvements in her symptoms and seizures.

As is often the case with epilepsy, Maya and her family experienced periods of success interspersed with disappointing set-backs. During one particularly difficult period, Breningstall noticed a small and unusual abnormality in Maya’s brain waves. Although this abnormality had never been documented in medical literature for epilepsy, Breningstall noticed that the abnormality seemed to correspond to her symptoms. Upon discovering this correlation, he changed her medication regimen. Maya immediately showed significant improvements, minimizing both her seizures and the painful headaches that accompanied them.

“Dr. Breningstall verges on sainthood. If he hasn’t heard from us in a few weeks, suddenly an email will pop up asking ‘How is Maya doing?’” –Mark, Maya’s father

Maya Today

Since coming to Gillette, Maya’s symptoms have improved tremendously. Not only does Maya’s family report that they’ve seen her seizures diminish in frequency and intensity, but they also have come to deeply appreciate the close relationship they’ve formed with her care team. The little girl who once missed three days of school each week now hasn’t missed a day in months. Throughout her medical challenges, Maya has maintained an engaging and warm personality that endears her to everyone she meets.

“She is doing better in all sorts of ways. You don’t even know how much freedom that gives you, how much stress that takes away.” –Sandy, Maya’s mother